Symptom or experience?

I hear voices, see visions and have a whole host of unusual experiences that have, at times, overwhelmed me. Although I’ve been diagnosed with schizo-affective disorder and dissociative identity disorder (DID), amongst others, I no longer believe that seeing myself as ‘ill’ is useful or relevant. Human experience is way more interesting than the labels we attach to it.

Whenever we talk about ourselves we tell stories. Without these stories, our experiences would sit—unconnected—like a thousand tiny beads. Telling our story helps us to weave connections between these beads, linking them together with different threads to create a tapestry full of meaning. This is a fluid and continually evolving process. Each new experience, interaction or connection reveals new aspects of the picture we are continually creating. It shifts and changes as we, ourselves, shift and change.

Reflecting our experience of the world, this process can be terrifying and confusing as well as beautiful and rewarding. In psychiatry, something profound happens to these stories. It’s as if someone takes your tapestry, labels it as defective and gives you the pattern you need to rectify your mistakes. Unquestioningly, you unpick your tapestry and—instead—weave the beads together to form a picture of symptoms, diagnosis, illness, genetic vulnerabilities and pathological responses to stress. With each stitch, those around you nod and praise your keen insight. After a while you forget that you ever had a story of your own. In this way, a ‘schizophrenic’ is born.

When I first started to see visions, I believed that they were monsters. More than that, I believed that I was a monster. Aged seven, I was sure that buried deep inside me was a monster that only revealed itself when I glanced towards a mirror. By wearing a ‘little-girl-suit’ and walking amongst the real humans I felt like a fraud. Unable to find words to express this, my distress was communicated through stomach aches and the need to repeat things again and again until I got them ‘right’. By the time I was a teenager I no longer believed in the monsters. Instead, I was convinced that it was an alien that was slowly and inexorably growing inside me, waiting to take control. I had no idea why this alien had chosen me but I knew that it was going to make me do something terrible—something inhuman. Again, as with the monster, I carried around a deep sense of badness and guilt for my future crimes. Again, as with the monster, I told no-one.

It was at university that my inner world first began to seep out through the cracks and show itself to others. By the time I entered psychiatry I believed that I was being watched by cameras, that I was the subject of an alien/government experiment and that my life was in danger. I was terrorised by three male voices who talked about me, narrating my movements and picking fault in everything I did. At the time, I thought these voices belonged to the men whose job it was to monitor me through the cameras. After my first admission to a mental health unit, the alien began to speak to me itself. It told me it was going to make me kill people and, to torment me, it showed me visions of the people it said I had already killed. It controlled my body, making me walk up and down the corridors to demonstrate its power over me. It turned my food into spiders and bugs, making me afraid to eat.

It was at this point in my journey that the story I had been weaving for my entire life overwhelmed me. It was at this point that I was given an alternative—a new pattern to help impose some order on the chaos. It was at this point that I became a ‘schizophrenic’. In the hospital I met many kind mental health professionals who gently reassured me that I was psychotic—that my complex and frightening beliefs about my experiences were ‘primary delusions’ and that the alien and the bugs were simply ‘hallucinations’, products of my unbalanced brain chemistry and my intolerance to stress. On adopting this new perspective I felt relief—the medical lexicon stripped my experiences of their power and removed any need to further explore their meaning. Content that my tapestry was complete I put down my needle and focused on living with the illness I now knew I had.

Years later, officially disabled and dubbed a ‘revolving door’, it was clear that I was stuck. After more than twenty admissions to the unit, the illness I believed I had periodically beat down the medication I was taking to keep it under control. Without meeting the Hearing Voices Network I believe I would still be sitting there—accepting my fate as a severely and enduringly mentally ill young woman. The peer support group I attended gave me something truly precious—a safe space to begin to find my own way of describing, and making sense of, my experiences. After years of parroting the biomedical picture I’d been given (‘Hi, my name is Rachel and I’m a schizophrenic’), I met people who wanted to know more. Slowly and tentatively, I began to unpick the medical tapestry and began to weave my own story once more.

The story I now tell about my experience is constantly evolving as I learn more about myself and my life. It reflects the connections I make with other people and the new experiences I am lucky enough to have. My voices, visions and beliefs are not symptoms of a mental illness, they are meaningful reactions to the trauma I survived as a child. They are no longer a burden that I bear, they are opportunities to understand and integrate different aspects of my life story and my self. The voices carry feelings and memories that I was once unable to bear, using metaphors when the content is too painful to speak directly. My overwhelming beliefs were meaningful, too. Built with the feelings born of trauma and vulnerability, they allowed me to express painful truths without needing to confront a reality I was not yet safe to explore. They hid the trauma in plain sight and, once I had the support to explore it, gave me a starting place to work from. I see my experiences as a creative adaptation, not a symbol of pathology. The pathology is in a society that is so afraid of hearing painful stories that it labels them as ‘delusional’ rather than witnessing the personal truth contained within.

Of all the beliefs that I have had about my experiences, the belief that I was ‘schizophrenic’ was the most damaging. In adopting the story that others told about me and abandoning my own sense-making process, I held on to a belief that both hid my traumatic life experiences and rendered them irrelevant. I can imagine that, as a reader, you may feel that the ‘schizophrenia’ belief was the lesser of two evils. After all, feeling trapped in a conspiracy was extremely frightening and it overwhelmed me to the extent of being unable to go to class, eat regularly or wash. I even harmed myself in vain attempts to get the alien out of me. Still, this belief was woven from the beads of my experience and—as such—contained the truths I was unable to face. It was something that, with the right support, I could work through and understand. Schizophrenia, however, led to a dead end.

I sometimes reflect on what it was that allowed the story of illness to replace my story of aliens and conspiracies. Childhood abuse teaches you that you’re evil, bad and that there is something deeply wrong with you to cause upstanding members of the community to become monsters. You learn that you are the monster, not them. Imagine meeting a doctor who says ‘It’s OK, we know what’s wrong with you’ and, best of all, ‘we have medication that can keep it under control’. Finally you have met someone who can both see the monster hiding beneath your human façade and has a magic pill that can cage it. Every person that spoke about my symptoms, delusion or illness merely served to reinforce that which I was already primed to accept—I was flawed, vulnerable and my experience of the world (and the abuse) was mistaken. It was all in my head. The biomedical model offered me both condemnation and salvation. It validated my inner badness and gave me the gift of living among the humans as long as my inner monster—the schizophrenia—was contained. It’s a powerful and seductive story and one that has taken me years to untangle.

As a mental health worker, I am often called on to attend mental health conferences and train professionals in ways of working with people who have distressing voices and beliefs. Given my own experience, I am acutely aware of the power of language and the importance of providing space for people to tell their own stories. I work alongside professionals who, with the best of intentions, still describe the people they work with as ‘psychotics’ or the ‘mentally ill’. It’s still commonplace to talk of delusions and symptoms, even in the most enlightened circles. My focus on language is, sometimes, seen as an irritation to allies. I can be accused of being pedantic and missing the point. Does it matter if we sometimes slip into the language of illness when we all agree that these experiences are meaningful, personal and have value? Yes. It does. The language of illness was the language used by the thief who first stole a person’s experience and replaced it with ‘schizophrenia’. Every time we use words from this language we inadvertently add our seal of approval to this thievery and make it that much harder for people to reclaim their experience as their own. Words have power.

What would happen if we found a way of talking about extreme experiences that left medical terminology at the door? What if we spoke descriptively of confusion, voices, visions, altered states, loss, sadness, elation, fear and disconnection? What if we left space for people to find their own stories and saw our role as a ‘sounding board’, ‘guide’ or ‘fellow traveller’? In the western world, each of us has grown up hearing the story of illness and it’s easy to underestimate the impact this has on our ability to move beyond it. Perhaps a good starting point is acknowledging how easy it is for this story to seep into our conversations and thoughts when we’re not paying attention. Finding new ways of talking about experiences requires us to firmly set aside the old ones. It feels awkward and clumsy to experiment with new words and phrases but then the journey of recovery is rarely straightforward. Perhaps a degree of uncertainty is a good thing. We should never mistake the map we are using for the territory itself.